Living With Chronic Pain

Wow. I don’t even know where to begin so I guess I’ll just start by writing about the Good in my life. I have so many things I feel incredibly thankful for, but I want to share the fact that I am officially off of the opioids! Yay!

No thanks to the pain management doctor though. He was becoming less and less helpful in working with me tapering off. I think the pain clinics will take your money as long as they can while they push for you to try the “new and improved” spinal cord stimulator or another spinal injection (I’ve had 18 of those injections and they never worked, but I knew it kept my doctor(s) happy and me leaving the office with new scripts).

I had been at a standstill for months and was really, really frustrated. Then the morning of my last scheduled appointment (in August) I simply woke up and said, “I’m done.” That was a defining moment for me. Not showing up to an appointment could easily break my pain management contract. And with the opioid epidemic, it was no secret that it was getting harder and harder to find pain management doctors that would accept the responsibility of new patients.

But I truly felt those words, “I’m done”. They were Soul Words. It was a Body-Mind-Spirit moment of consciousness; the kind that can make your toes curl, like the blissful moment you fall into an orgasm. But unlike orgasms, Soul Words tended to elude me. This was profoundly different than saying “I’m working on getting off these meds that I’ve been taking for the past decade”, which I always meant each time I said it, but during that mind-blowing moment it became crystal clear to me that I would be on the meds as long as a dr. told me I needed them; that it was okay; go on, have some more. It was all simultaneous, and from the very center of my Soul, the Source of those two powerful words, I faced honesty and truth without judgement and without doubt. I was done. So I didn’t go to that appointment.

The next day I felt a little uneasy, but I put on a new fentanyl patch (which would end up being my final one) and began to take note of when I actually “needed” a pill for the breakthrough pain. I was still being prescribed 180 of the 10mg oxycodones for the “breakthrough” pain each month to take along with the fentanyl. I’ve been prescribed as many as 210 pills with the 15 patches; but this didn’t change the fact that I had way more than I should. Way more than I needed. People without the opioid tolerance are usually sent home after surgery with 30 pills of 5mg oxy, vicodin, percocet, etc. with maybe one refill, if they’re lucky. For me, that would be like getting a box of Tic Tacs, because every month the pharmacist would hand me enough opioids to kill a pack of mules.

Making the decision that I was done made me realize what a habit it had become to just take a breakthrough pain pill at the first sign of pain, even the slightest twinge. You see, it had been drilled into my head that “you can’t let the pain get too bad because it’ll be harder to get under control”. Well, of course I didn’t want that to happen!

Now I had to face the unpleasant task of re-shaping my thoughts and begin to lessen my fear of something getting out of control. Oh, the irony! At first it was awful to make myself stop each time I reached for pill and ask, what else can I try first? (and not in conjunction with?). I knew I would have to deal with some additional discomfort than what I already lived with every day.

I knew I could try an ice pack. A warm epsom salt bath. Some gentle yoga. Qigong. Meditation. The tens unit. The compound cream. Writing. Creating. Reading. Even that awful acupressure mat. I had this mental list of the things I knew I could try first and If those things failed, I took some Advil or Tylenol. Then I took an oxy. Sometimes another one an hour later. Then I began to notice that as I reached for the pills less and less, the first options were working better and better.

It took a long time though.

And I am not a patient person.

I knew I had hit a milestone when I began breaking the oxys in half. Little by little, day by day, I made progress. Then something totally amazing happened. I went a day without any pills and didn’t even realize it until I went to bed and saw half an oxy from the day before still sitting there on the shelf of my medicine cabinet.

I’m in no more pain than when I was on the opioids. I haven’t had any worse Fibromyalgia flare-ups either (my rheumatologist had once told me that long-term opioid use can actually cause Fibro). Well, no dwelling on the past decade, eh?

My therapist told me it could take another month or two to get my serotonin and dopamine levels back to normal, but at least he’s not suggesting we increase my antidepressants. I will more than likely be on the neurontin the rest of my life because of nerve damage from surgery #1. But I’m okay with that.

Moving forward, I ended up flushing 6 leftover patches and 97 oxycodones. l still have the other half of the last oxycodone sitting on the middle shelf of my medicine cabinet. When I see it every morning and night when I take my other meds, I think about how it no longer has any power over me. It’s a reminder of how far I have come.

I spent this past weekend away at a beach house with 3 of my girlfriends. I’m talking about a real weekend “getaway”- as in a trip without the hubby and kids, whom I love dearly, really I do but…

Aside from me there was no one else to worry about. I packed my weekend satchel, my laptop, a cheesy romance novel, a few bottles of Shiraz and two six packs of Strongbow. Oh, and chocolate; I most definitely didn’t forget the chocolate. And of course a few Tarot decks to read for the gals.

No curfew.

No whining.

The only person I was in charge of was me. However, shortly after arriving I nearly panicked when I found out there was no phone service, no internet (!), not even a t.v. What the hell? (it helped that I could walk down the hill about a quarter mile to get a signal and call my husband and kids when I wanted to touch base).

Well, it ended up being a real blessing. There was plenty to do and time flew by. We hit the pubs indulging in Lemon Drops and/or local ale, walked along the beautiful Oregon beach, went to the movies, visited an art gallery, went wine tasting, ate raw oysters, and slinked into a local dive bar where we sang horrible karaoke. We also played tons of board games, laughing until our sides hurt. (I think Cards Against Humanity is my new favorite game).

It was a weekend to luxuriously soak in the beauty of Sisterhood. It was a celebration of being who we are as women without gimmicks or guises. It was about truly shedding the skin of limiting societal structure. It was liberating. But most of all it was just genuine Fucking Fun. And Fun is one heck of a magickal tool to replenish and raise our vibrational frequency because it touches that tender spot of raw spirituality that lives deep within us all.

It was around the time of Imbolc that I unplugged. During that time I used my laptop strictly for daily writing and for checking emails every other day or so. I even remained unplugged quite a bit longer than I had planned on because after the first week I realized just how badly I needed it. I politely requested for my friends and family to not mention news topics (such as all things political, disastrous, entertainment, gossip of any kind, etc..) for one week. Just one week was all I asked for. I knew I might be tempted like I am with sweets, but I also knew that ignoring trivial things like Facebook would be a breeze. I barely spent time there as it was, infrequently checking in with the one small local Sisterly Tribe “secret” group I am a part of.

Most of those who knew of my intentions were shocked, some were appalled, and many simply told me I couldn’t do it for a whole week. It was crazy. Weird. There was just too much juicy info out there, loads of yucky stuff to feed off of. And what if they really needed to get a hold of me? Like what if the world was actually coming to an end, a family tragedy occurred, or the zombie apocalypse had commenced? I told them that of course those things were important to me, so please, by all means tell me! (duh!) But please call me. Don’t send me an email, or tweet it. And don’t text me to give me the news. I want a real phone call, you know, where you can actually hear my voice and I can hear yours in real time.

I will say that the time has flown by. I’ve been busy writing, painting, sketching, and madly creating some crazy stuff that I absolutely adore. I’ve carved out time for Tarot readings and tea with friends, both of which I cherish. I’ve been busy working on different areas of my life and am spending more time than ever with my husband and kids. My daughter and I are currently making our own Spirit Dolls and I have enjoyed our special time in the studio.

I have been practicing yoga 5 days a week and am thrilled to write that I have stepped down further on my pain meds. If all goes as planned, I will be completely done with the fentanyl and taking a fraction of the breakthrough medication by June, two months before my personal goal.

I thought that now I’m back on the grid I should probably catch up on some things I’ve missed out on, but the more I think about it the more I realize that I’m much more interested in enjoying the fresh Spring strawberries. They are way juicier, much easier to swallow, and truly make me smile.

May Spring bring you new, deliciously juicy experiences that make you smile too!

My life has been busy over the past few weeks. We’ve had some storms come by, along with remnants of Typhoon Songda. The Oregon Coast weathered 2 tornadoes and while we received over 9 inches of rain in two days, we were fortunate and didn’t lose any big trees, only our power.

We held onto our plans, dropping the kids off with my parents to head home to do some much needed (in my opinion) work on my studio. As promised, my husband helped me declutter and paint. I had been gearing up for this for quite some time so when the power went out we continued to paint by candlelight and ate cold pizza while listening to the giant trees outside creak and groan with the wind. It was really rather romantic, that is until our backs both ached and we joined in the groaning of the trees. My husband couldn’t help but allude to the fact that we should be groaning while throwing our backs out doing something that was actually fun. I told him to shut up and keep painting so we could both actually finish. His only response was to flick paint at me. My husband…speechless? Encouraged by his lapse in sarcastic comebacks, I told him it would be nice if he tried not to make a mess this time. A little back and forth innuendo match ensued which made for great entertainment.

Almost there!

What once resembled a curio/new age store now feels very “Zen” to me. A little sparse in comparison, it has become a place of serene solitude. I have organized my herbs, crystals, and tools of the trade in a way that I can actually find something easily. My craft area and supplies are separate from my writing desk. It’s a humble, quiet retreat that calms and soothes my spirit as soon as I walk in whereas before I felt weighed down in a mess of unfinished craft projects and candle stubs from a previous ritual.

Remember that binder of daily routines, tasks, and lists? I condensed things further into a Witchy bullet journal. I have my weekly plan, daily tasks, important and not-so-important tasks, weekly menu plan, the moon phase and the sign(s) it’s currently in, the weather, Tarot card of the day, spaces for quotes I like, and my long wish list of things I want to try, places I want to see, and things I want just for the sake of wanting. I have a place for my accomplishments, several pages for a brain dump, and a place for a monthly memory collage. I also made a symptom log in order to find any trends or connections to certain activities I did, and another log to track my meditation/yoga/tai chi practices. All of this easily fits in this one little 5×8 journal that will easily see me through to Imbolc.

North

West

The process of clearing out and simplifying has led me to reevaluate the other stagnant areas of my life that are in need of attention as well. One in particular I have been avoiding for some time.

It’s not easy to choose the path opposite of least resistance, but I did. I saw my pain management doctor today and I told him that I wanted to step-down on my pain meds. I told him what I wanted in the long run and the accompanying fears that go along with it.

We agreed that over the course of the next two weeks I will step-down from my current dose of Fentanyl 75 mcg/hour to a 50 mcg/hour patch. I will also go from 80 mg oxycodone for breakthrough pain down to 60. That’s the short-term goal. If things go well, the next step will be to drop down from the 50 dose of Fentanyl to a 25 mcg patch with an additional 12.5 mcg patch if needed. At that point I’ll have dropped down to 30-40 mg oxycodone.

I honestly don’t know where it’ll go from there, but my ultimate goal is to be off of the fentanyl completely by August. I haven’t set a complete shut off time for the oxy, but that will more than likely be revealed as I get closer to my goal.

My doctor and I talked in great detail about the possible hard times ahead. I have been on pain medication for so long (starting like so many others like me; with a little vicodin, on to morphine, then to oxycontin and methadone, to where I am now) that I probably won’t feel too great and I’ll have to deal with my pain spike in other ways. He paused here and there as if giving me the opportunity to change my mind. We ended the appointment with the agreement that I give him a call between now and my visit next month if things became “unmanageable”. That made me laugh. I told him that things were already unmanageable for me in the opioid department. Duh!

So there you have it. Whatever the oncoming weather, be it storm or sunny skies, whether I’m huddled in the corner in a cold sweat or sitting in a chair reading a good book, I’ll be ready to deal with whatever comes my way and stand behind whatever choices I will make. It’s up to me now.

Since my last post I have been working really hard to keep up with my daily tasks and routines. I’ve followed through to the best of my ability, which fluctuates from day to day. But everyday I give conscious effort to do the best I can with what I’ve got.

That means remembering who I am and what makes my life feel “good” and “on track”.
The crazy thing is that I haven’t even beat myself up for not accomplishing everything on my “list of the day” and that in itself is a major triumph.

When I woke up this morning, before I even got out of bed I asked myself a simple question; How will I choose to spend my time today? And the question didn’t make me anxious.

I say this because two weeks ago, time management was difficult. At the end of a day where all those things on my list seemed to remain one step ahead of me, I was mentally, physically and emotionally exhausted. I ended up being a crabby bitch when I started thinking about all the things I didn’t get done. I felt like I just couldn’t keep up with life.

So I took 3 cleansing breaths and wrote out the bare bones of this spell, which in part was a letter to myself, (but really, aren’t most spells merely letters to that aspect of ourselves that we are trying to connect with?) and then had a heart-to-heart talk with the Goddess.

Remember your simple altar setup. K.I.S.S. (Keep It Simple Stupid). You know that during this time in your life simplicity avoids confusion and saves time!

So set it up and quit over-thinking, because I know you will want to. You just love second-guessing yourself. Keep acting that way and all the thyme in the world will not be enough.

Cleanse, cast, and invoke. Then move forward.

Prepare the oil in the bottle with a dropper, add the thyme, cap and shake to mix well. Imagine that while you are shaking the oil that you are also dislodging any negativity or frustration that comes with simply trying to keep up with life. But be careful not to break the bottle with your built up ick, because then you’ll have to start all over again, thus wasting more time.

On the piece of paper write your petition to the Goddess, feeling your deep personal need for successful time management. And remember, K.I.S.S.

I wrote to Her during my ritual, expressing my longing for less chaos and more peace throughout my days. I didn’t want to feel rushed, and I didn’t want to be angry at myself anymore because anger physically hurts me. I wanted her to know that I was willing to keep my priorities in focus, and to take charge of my actions, as each one leads to the other, and so on.

I folded the letter and held it in my hands feeling my fingers tingle with energy. When it felt right, I placed the piece of paper under the timer. Then I dabbed a small amount of the prepared oil to my wrists and rubbed them together.

I lit the orange candle and started the timer.

I gazed into the candle flame and pictured myself going through a typical day at a calm even pace. Things were running smoothly. Appointments were remembered and household duties were under control. My mind wandered into the darkness a few times but I reigned it back in.

When the timer had sounded, I extinguished the flame and went on about my day. When that feeling of tension began bubbling up, I would bring back into focus the orange candle’s flame and feel the loving support from Her. I was then able to trust in my ability to take back control of my day.

I did this every morning for 3 days, and every other day since. I read the letter, dab on the oil, light the candle, start the timer, and then visualize a smooth sailing day. It only takes a few minutes, and within those first 3 days I began to see a noticeable difference in how I reacted to situations, and how I made better choices in managing my time.

I’m going to do this as often as I need, (replacing the candle when needed) but I choose not to waste my time obsessing about it! I will do it and then go on about my day.

The best part about this daily “blessing” is that I’m finding that if my day didn’t go exactly as planned, I don’t beat myself up about it. One of the things I’ve learned since starting this is that successful time management is the ability to take on unforeseen challenges without causing negativity to creep in and slow me down.

Since chronic pain came into my life 9 years ago, I’ve been trying to deal with a new way of living and with it a whole new way of thinking. And I’ve done a lot of thinking in the past few weeks as I’ve hit some highs and then some low-down lows.There were times in the past week and a half that I couldn’t get out of bed. There have been days in the past week where light and sound were excruciating to my senses. Two days ago I dropped a dinner plate when my hand spasmed and all I could do was helplessly look at the shattered pieces on the floor.

The feeling of helplessness just builds up…and up…and up….

When I’m having a really bad episode and all I can do is lie in bed and stare at the ceiling, I notice a cobweb in the corner. I’ll turn my head and see an empty water glass that needs to be washed. When I turn the other way I see that my closet is messy. For days, sometimes weeks, (at one point about five years ago it had been almost 6 months) my eyes and mind will focus on all the imperfections in my home and see it as a reflection of me as a person. Me as a wife and mother and how I cannot care for those I love the most.

Then when I begin the upswing of good days, I can’t simply snap my fingers and make all the stress disappear. I fill up with anxiety every time I see my overloaded inbox, the empty refrigerator, and the giant piles of laundry. Then I’m like a lot of chronic pain sufferers in that when I have one decent feeling day, I will run around frantically trying to catch up. I’ll clean like a maniac in hopes I can get it all done before the pain returns. And it always does, and at that point it’s usually pissed.

Even after all these years, I’ve yet to fully come to terms with my illness and pain. I’ve read countless books on my conditions and have seen the top specialists. I’ve been coaxed into getting reacquainted with my body (a body that seemed to no longer like me) in order to be more in tune to our (its) rhythm. I’ve learned about energy management and how to create a schedule that works for me. I have seen the need to pattern my week so that I have active days followed by more restful days. I know I have to to do a little bit at a time to prepare for holidays, vacations, or long, hectic days. (I’m eternally grateful that things were good for the California trip) I’ve been schooled in the ways of expressing what my needs are and how to drop my pride when I have to ask for help.

Easier said than done.

I readily grasped the idea to make an outline for my life. I’m excellent at brainstorming ideas and making plans and schedules, but I’m absolutely terrible at following through. You see, I’m a list-maker. I LOVE to make lists. I have a list for nearly everything. Things I need to do, things I want to do, things I need help with, menu planning lists, shopping lists, need to follow-up on lists, home project lists, and on and on it goes.

During the bad times I’ll have short-term memory issues and terrible brain fog, getting easily confused (especially with dates and phone numbers). So I have spiral bound notebooks in every corner of the house (and in my project studio, but let’s not even go there) so that I can jot down ideas and plans as they come to me. Then when I get too many of these ideas and lists and sketches scattered about, I will tear them out and slip them into clear sheet protectors and then place them in the correct three-ring binder, complete with labeled tabs.

Then after I have everything in order, I don’t know where to begin. Which binder was the kids’ back to school supply list in? Where was the list for treatment plans? Where was the mind-map for my dream week? This eventually leads me to the fact that the current organizational system isn’t working.

So I’ll spend time flipping through the shiny plastic coated papers and sort them into new categories. Then I’ll begin to rearrange the tabs, like I’d like to rearrange my life.

So here I go again. I have pared down to one small binder and I’ve put the other binders away. I am back to the basics with my original, simple day to day plan. I know it works because some of my best months in the past few years have been when I followed it. The problem has always been easing back into the routine after being out of commission for more than a few days. The perfectionist in me doesn’t want to just jump in where I am. I want to start with a clean, perfect house. I’m even sure there is such a thing. Or I think it’ll be best if I start at the beginning of the month. Or after ___________.

Well it’s Monday. I suppose it’s as good a day as any to start. I got out of bed and showered. I even followed my ‘routine’ for the day. I’ll be honest. I had a little bit of difficulty following my plan today. It wasn’t hard remembering what needed to be done, but hard to pace myself. To not panic. To not work ahead. To make myself stop between things. To not do two things at once. To have realistic expectations. And to celebrate the small successes as long as I was making progress.

I think back to my sappy post from a few weeks ago and am amazed at what all happened between then and now.

I will admit that yes, my husband is sweet and caring and thoughtful and good in bed. And yes he missed us like crazy while he was gone. Yet I found myself rolling my eyes when I saw the fourth text from him within an hour. Wasn’t he supposed to be busy doing all that fancy biomedical training?

He left us with big hugs and kisses and even the sweet little journals, but he also left the pool looking like shit. I mean Swamp Shit. I asked him for weeks if he could get the pool up and running before he left on his trip. I never really paid much attention to what he was actually doing, just that he was working on the pool. Besides, he knew what he was doing. And what a relief, because it was going to be getting hot and the kids were going to want to swim. Come to find out after he left (he was lucky he had already left the state of Oregon) he actually filled it with water after almost a year of non-use. My only guess was that he thought he could do shock treatments daily and the pool fairy would come in the middle of the night and voila! (I’m sure there is a pool fairy, but she’s probably a smart, sassy undine who didn’t want to help him anyway). He had to have been hoping I didn’t go and look over his shoulder or check on the progress he wasn’t making. Honestly, I don’t know what he was thinking, but I sure as hell know what I was thinking.

It was very warm that first week, and the kids were wanting to swim so badly. But after one look at that nasty water I knew I wasn’t letting them so much as dip their big toe in that pool.

So I did what any crazy Mother Bear with fibromyalgia, CFS, ruptured discs, spine hardware, and an “I’ll show him”attitude would do and spent the day draining the pool. Early the next morning I scrubbed and shop vac’d as much and as fast as I could because I desperately needed to refill it before the plastic hardened (the temperature was going to reach the high 90’s that day). I refilled it, scrubbed and rinsed both the filter and the pump and sprayed out the skimmer. For the next several days I spent hours using the broom and net. I checked the chlorine and pH, and added more chlorine. The levels were fine but there was still some debris floating in the water. The skimmer wasn’t doing as good a job as I had hoped. It was also still a bit cloudy. So I gave it a dose of shock treatment and by the next morning the water was clear but all the the debris had sunk to the bottom forming a gross sludge.

Here I was at the end of week one and also at my wit’s end. But I wasn’t about to give up. I began rigging a pool vac. I had no idea what I was doing other than slowly morphing into an absolute lunatic; but I was cleaning that pool even if it killed me. I had wielded my nightmare into becoming my quest and I spent 5 hours, a ton of duct tape, an extra garden hose, pool hose, and shop vac hose…. and after a ton of trial (the original pool vac was completely useless by the way) and error, cuss words, and more trial and error, I must say I’m proud of the crazy looking thing I thought up. With a good siphon trick, (with a little added suction boost from the pool fairy who had been watching all of my hard work and was obviously now on my side) I was well on my way to victory. I was going to conquer the monster from the bottom of the pool and the demon within.

Towards the end I felt a burst of much needed energy as I pictured my significant other sleeping at the Marriott getting fresh towels daily and his bed made for him. I was sure he had already swam plenty of times while I had been here working my butt off so that our kids could get the chance to. He was fed meals during his classes and given a $27.00 per night dinner allowance while I was too tired and in pain to cook, doling out freezer meals to the kids that I had warmed in the microwave.

Several hours after I had finally finished the pool my husband called. He asked why I hadn’t answered any of his texts. I curtly responded that I hadn’t had much of a chance to look at my phone. Without much pause he told me about his Sunday afternoon. He went for a walk to the city center where he decided to watch the new Star Trek movie and then wandered around the mall for a while. Then on his leisurely stroll back he sent me pictures of the scenery, the park, the neat statues, etc. He then made an offhand comment about me sending him some pictures of myself later on.

That was it. I felt like an enraged cartoon character (think Tom the blue cat or Wile E. Coyote) red with anger, whistling like a steaming hot tea kettle about to blow. I had held it together, kept my complaints to a minimum, was supportive of him. But now all bets were off. I spoke through a clenched jaw to keep my voice down as I explained to him what kind of Hell I had been living in. My fingers were cracked and raw from all the stupid tape and I had a horrific sunburn. And on and on went my tirade. I felt so much better afterwards and had a good cry. All while he was still on the phone.

I had done one of my crash and burn cycles plenty of times before, and I spent the next 7 days recovering from the pain flare that I caused myself. The kids did get to swim a lot the next few days while I lounged in the adirondack watching them splash each other and play “shark”. All I needed then was a cute straw hat and an ice cold lemonade.

And as much as I hated to admit it, I also felt a deep need for my husband. Maybe it was my triumph. Maybe I was proud to prove to him I could do it. Perhaps it was because I realized I had the strength to do something so physically challenging by myself. Or quite possibly it was after faithful daily Qigong practices of the 8 Brocades, some heartfelt journaling, meditation, a myofascial release massage, and extra helpings of pain medication and supplements. Maybe a combination of all those things. All I knew was that I actually missed the lazy ass.

So much has happened since we left for our vacation. Good things happened in our little bubble and bad things happened on a global level. For purposes of this blog and my topsy-turvy emotional state, I’m going to stick to my little “bubble”for the most part.

Sigh.

Our week at Disneyland was all in all a success. It wasn’t perfect, it was really hot and crowded. The kids weren’t perfect. My husband wasn’t perfect. And I know for damn sure I wasn’t perfect. But those little imperfections were so small and short-lived that they were easily forgotten about. So basically we had an amazing adventure.

And I was scared.

Scared of a panic attack on the plane because of my claustrophobia. Scared that the kids were going to fall out of a ride. Scared I would be in so much pain I’d have to spend a lot of time in the hotel room alone. I was scared of being scaredof the crowds. Scared the kids would drown in the hotel swimming pool. Scared of forgetting my fentanyl patches. Scared of a crazed gunman running loose….the list could go on and on but you get my point. Catastrophizing is something I’m really good at and I do it with great clarity and knack for detail.

No wonder I don’t ever like leaving the house.

But once we boarded the plane, cramped as it was, the kids’ excitement was contagious. It was not only their first flight, but their first trip to Disneyland. We met the pilots who handed out stickers and trading cards (I have no idea who you trade Alaska Airlines cards with, but hey, it’s the thought that counts).

The four of us were pretty much inseparable for the week except for on two occasions. One was when I took a few hours to myself at the resort spa getting a massage, using the sauna and steam room, and then their amazing shower with its expensive shampoo and body wash. While my hair was drying I drank every variety of tea they had while wandering around naked underneath a fluffy white bathrobe and spa slippers.

It was pure bliss.

The other time was when we dropped the kids off at “Pinocchio’s Workshop” (the only prerequisites were that they were “potty-trained” and “played well with others”) to be watched properly while my husband and I took a couple of hours to ourselves in the hotel room. Alone at last, we ordered room service, fooled around and then took a nap while our 9 & 10 year-olds ate Mickey Mouse shaped chicken nuggets and apple sauce under harsh fluorescent lighting amongst much younger kids. I figured at least they had each other. After being “rescued” we took them over to Downtown Disney for a big waffle cone to help make-up for it. For the most part it worked.

The thing I was surprised about was my lack of homesickness. I still get weepy just thinking about how much we enjoyed each other (kind of sad, I know). The day after we got home my husband started talking “reality”. We had to go over bills and discuss his upcoming two week trip for work. I actually started to cry. I didn’t want all that reality crap. Give me Cinderella and the dumb light parade. I want to watch fireworks while standing in line for a ride. I want to complain about how much my feet hurt, and by how hot it was so it must be time to get another frozen lemonade.

Coming home meant I was no longer sheltered from the big wide world. I was ripped from the clutches of Fantasyland where there was no bad news except that maybe the carousel was down for the day. We never once turned on the t.v. in the hotel room, never saw the news or read the paper. I left my laptop at home and the only apps we used were the ones for the Fastpass and other related “necessary” updates. We were constantly busy at the park or at the swimming pool (where I rode the giant waterslide with the kids more than once).

So the reality of the world hit me harder than I could have ever imagined. It was time to return to dealing with laundry and dentist appointments, and hearing about what’s going on in the “real world”. How fortunate we were to have the luxury of even being able to seclude ourselves in non-reality, turning a blind eye to even Tomorrowland’s foibles. Most of the world has no such luxury. I’m daydreaming of frozen lemonade while over 600 million people lack access to clean drinking water. The children in war-torn countries have no idea what it’s like to stand in line to go on a thrill-seeking ride. Thinking of these things can really put things back into perspective, depressingly so. I have been working hard not to feel horribly guilty for indulging in a family vacation that we had been saving up for years to take. Knowing these things makes it all that more special; that we were blessed with a reprieve, and that we took joy in just being together.

Over the past few days we have looked through the many photos and laughed about the ridiculousness of some of the rides and I am able to smile. As far as reality goes, that’s the reality of our Summer Vacation and I will treasure it always.

This morning, after my shower, I wrapped a towel around my hair and another towel around my body. As I was about to leave the bathroom I stopped, because out of the blue, like a slap on the butt, I decided to do something completely out of character. I dropped the towel I had wrapped around my body and courageously stood in front of the bathroom mirror naked as I wiped the steam from the mirror unveiling my body; baring it all.

I don’t spend a lot of time looking at my naked self. I’m not sure if it’s pure avoidance, some kind of shame or form of embarrassment. Maybe it’s simply fear, because fear will branch out into all of those other things; (avoidance, shame, embarrassment). But there’s a part of me that is downright angry at my body because when the pain flares up and things seem like they’re spinning out of control, I feel so fragile; like a raw egg that could crack at any moment. But I was tired of looking the other way unless I was clothed and in front of a full length mirror.

On the contrary, at this moment I stood facing myself, looking into my own eyes. Was I seeking an ally? Some sort of approval? Would I find that part of myself that sees beauty in all things, even the physical me? I think I did find it because I took a deep breath and relaxed, allowing my eyes to move slowly along my body.

My eyes were immediately drawn to the deep surgical scar that ran vertically from my navel down to my pubic bone. The evidence of a failed back surgery. My gaze then wandered across my lower abdomen, along the faded yet thick scars from two C-sections. Just above those were five small incision scars scattered across my lower belly from a laparoscopic uterine lysis surgery to remove scar tissue adhesions.

Then across my torso were four puncture-like scars from when I had my gallbladder removed. There was a small scar that ran under my left breast from a cyst removal when I was fourteen. I knew without looking that I had a five inch scar down the middle of my back from another failed back surgery; the one that caused permanent nerve damage.

Ah yes, I mustn’t forget the faded stretch marks that had inched their way across my belly and ended in thin tendrils along my hips.

What I was looking at was a roadmap of my life.

Then in a flash of clarity, like another slap on the butt, came the realization that my avoidance of looking at my body wasn’t just the physical scars, my widened hips, my enlarged breasts that fed and nourished my children, or the little laugh lines forming next to my eyes.

It was the lack of willingness to really see.

Each of those things are filled with strength, hope, survival, nourishment, laughter, love, and life itself.

Each one of those things are a facet of me.

I looked again, this time more closely at myself and searched for the strong woman that I know I am. I want to get out of the habit of feeling like a failure as a wife, a mother, and a witch. I must truly look at myself and honor my many strengths while acknowledging my many weaknesses. I know in my heart that I need to surrender and trust in the fact that my physical body, even though its limitations and pain, holds me and supports me through the good times and the bad.

I want to enrich my life and let go of The fear, judgement, and the ugliness of self-doubt that holds me back from living my life to the fullest. Gazing into the reflection of my own eyes, I saw the warmth and comfort within. Now is the time to shed away all that doesn’t serve me. This will be a perfect starting point on my journey towards re-balancing and repairing my body, mind, and spirit.

I am not a failure. I am a strong, independent, loving woman and I need to be proud of all the things I have lived through and fought for in my life. It’s time for me to be proud of all the things I am currently living through and fighting for at this moment and those moments yet to come.

I then spoke gently to myself.

“You will no longer be a victim. You can face your pain and fear head on because you’ve done it all of your life; you just didn’t realize you were successful at it. You now know you are. You no longer have to pretend you’re not in pain or overwhelmed. It’s okay, and it doesn’t make you a failure. It’s time to claim loving acceptance of your physical body, trust in the knowledge your mind now holds, and align with your spirit exactly as you are.”

Only I have the power, knowledge, and control to overcome the obstacles in my life to promote healing on every level.

You have probably heard that getting out of your comfort zone is a good thing. Stretch your wings. Aim high and venture forth.

But honestly I don’t want to.

I like it here in our little house in the trees, where I can’t see the road, or neighbors, and where the deer bed down in the meadow at night. It’s comfortable, it’s isolated, and it’s far removed from the outside world. Yes, I am a hermit, one who imagines herself being just fine with living out here in the woods alone. Someday I want to be the crazy old woman in the forest with a big cauldron in her front yard and everyone will think I’m completely nuts. Even the UPS driver will wish I wasn’t on his delivery route. Of course I’ll have a few cats and a pet crow that likes to perch on my shoulder and whisper secrets in my ear.

And if that’s all I had for companionship I think I’d be alright. Besides, other than my cute cats and cool crow, I’d have myself to talk to.

Anyone like me who suffers with Social Anxiety Disorder, whether it’s from chronic pain, anxiety, depression, PTSD, etc. can relate to what I’m saying and know how debilitating it can be.The truth for me is the longer I stay away from people and public places, the more I stress about doing so. The more I don’t want to. And there are more of us than people think there are.

Over the entire month of January I left the house for only what was necessary; my kids’ basketball practices & their Saturday games, which of course puts me in a social situation with other parents who (more times than not) are overly aggressive. I’ve been to doctor’s appointments, and the grocery store. That pretty much sums it up. I don’t think the art studio counts.

This is coming from a woman who traveled to Europe to meet up with her girlfriend back in the day. Wow, a lot has happened over the last 15 years.

But I ventured away from my house last night, just for fun, which was something I fought really hard against. I knew this outing would put me in a public setting that I wasn’t used to. It was far away from my comfort zone, like the little town 12 miles up the road. It wasn’t the elementary school gym and it wasn’t my doctor’s office. I was headed into the metropolis of busy freeways, lots of bridges, and narrow city streets. There would also be people. A lot of people. My level of anxiety was high when I put on my coat and several times I wondered if I could just maybe, somehow get out of it. But I sucked it up and spritzed on my best perfume then smiled at myself in the mirror because my husband and I were going on a date. The first one in many moons.

We saw a movie at a theater downtown then walked along Hawthorne where we spent way too much time in Powell’s Books. We skipped the trendy restaurants and Portland’s food trucks and finally settled in at our favorite burger joint. We both ordered pepper bacon cheeseburgers and waffle fries. We kinda shared a large milkshake- I say “kinda” because I slurped down way more than my fair so I could get the most (I’m bratty that way). It was an absolutely disgusting meal, and I enjoyed every bite.

It’s times like last night that I’m reminded of the good things that exist outside my comfort zone. There’s no guarantee in life that I won’t be in a car accident, mugged, or worse. But then again there’s no guarantee that I won’t slip and fall in my own home while holding scissors the wrong way or not get trampled by a deer (that actually injured me once, but that’s another story) while wandering along our trails.

Ask me today and I’ll tell you I’d love to see an old friend and catch up. Hell, I’ll even drive to the mall and do some shopping in the Macy’s store where that horrible shooting happened a few years ago. If I keep pushing myself, especially in times I don’t want to, I may begin seeing the world from beyond my comfort zone as somewhere I sometimes would rather be!

As much as the eccentric crazy old woman who lives deep in the forest spending her time conjuring magick and the occasional mayhem just to keep things interesting sounds fun, maybe I don’t really want to be alone. At least not yet.

But if I finally do find myself there I really hope I will have earned it. That I’ll have come full circle by venturing out of my comfort zone. I’ll travel and do great deeds. I’ll meet new people and hopefully share lots of laughter and joy. I’ll spend years and years loving my grandchildren, and teaching them the Ways of the Witch.

And there’s so much more. I want to give more time and energy to charity. I want to sew quilts for the newborns in the neonatal unit (I’ll never forget that small yet caring gesture from a stranger and how it gave me and Atticus so much comfort when he spent his first month of life there). I want to spend oodles and oodles of time with my husband, walking on the beach, playing chess, watching stupid movies, and laughing together until it hurts. And of course making love. A lot.

I want to see Greenland one day. I want to watch a play on Broadway. And while I’m at it, I want to have backstage passes to a Duran Duran concert and a private dinner~and stuff~with John Taylor (hey, a girl can dream)….He’s the one “free pass” *wink, wink* that my husband has given me, no questions asked. I only said okay because I didn’t want to hurt his feelings (another *wink, wink*). But gosh I love my man.

I want to keep making time for my watercolor painting and Soulcollage work. I want to continue guest speaking at Tarot workshops and at the University. I want to write a book. And I want to blog.

I suppose I have a lot of living I want to get done.

I know there will be bad bouts of pain where days and weeks will easily slip by, but I know that I have to fight to be a part of the outside world and push through my comfort zone once the pain episode subsides. Who knows? Maybe something greater than I ever thought possible will come out of it all. But before I get busy, I think I’ll go and call my friend and catch up. Maybe meet for lunch…. In the city.